The Courage to Hope

 
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“Of St. Paul’s trio of Christian virtues —  faith, hope and love — the greatest of these is love, but the most neglected virtue is hope.” - Former Archbishop of Canterbury Donald Coggan.

Hope has become a precious and diminishing commodity.  Many of us are not hopeful about the direction of U.S. foreign and domestic policy.  Many are not hopeful about the future of our environment. Many are not hopeful about their own finances, housing, health, or even food security.  

Why?  We’re certainly not the first generation to face serious challenges.  Our ancestors lived in troubling times. What’s different? Why are suicide rates climbing and birth rates declining?  Why are dystopian novels, films, and television shows so popular? Why are so many among us cynical and disengaged? What threatens and even destroys people’s sense of hope?

I think it’s fear.  Fear is the greatest threat to hope.  Some of us fear that our political and economic system is out of control.  We fear that we, or our children and grandchildren, along with other species, are compromised and will eventually be annihilated by the technology and climate we’ve created. 

Some people fear that there will be no place for them in our land. Others fear that strangers will take over our land. The millennial generation fears their downwardly mobile trajectory.  Lots of us fear growing old without adequate resources and support systems. The most desperate and hopeless among us fear that life itself has become meaningless.

Hopelessness, the outgrowth of fear, is the energy drain of humanity. 

Why bother? Life stinks, and then you die.

I believe that hopelessness is a conspiracy of evil that keeps us in bondage.  Without hope, people give up and die. Dostoevsky puts it this way: “To live without hope is to cease to live.”  I am convinced that the evil powers and principalities of this world conspire to make and keep us hopeless and therefore imprisoned in our perceived powerlessness.

Yet hope is at the very essence of faith.  In Hebrew, “hope” means “to wait for” or “look to.”  Thus, the author of Hebrews writes: “Now faith is the assurance of things hoped for, the conviction of things not seen.” (Hebrews 11.1) 

When I received my diagnosis of Frontotemporal Dementia, I was anything but hopeful. But eventually, I got my act together and decided that I am going to live as fully as I can for as long as I am able.

For the past two years, as Emily and I travel speaking and preaching about life with dementia, it often seemed as if we had opened Pandora’s Box, talking about a condition that many fear and dread. One day, Emily asked me if I actually remembered the ancient Greek myth of Pandora’s Box and suggested that I re-read it. Let me remind you of the story.

Once upon a time, there were two brother gods whose names I can no longer pronounce. One day, one of the brothers discovered the secret of fire, and this angered Zeus.  As punishment, Zeus chained him to a rock for many years. And if that wasn’t enough, the great god went after his brother by way of trickery. First, Zeus ordered the god maker of all things to craft him a daughter out of clay. Zeus named her Pandora, brought her to life, and gave her as a bride to the brother. Zeus then gave the newlywed couple a gift – a locked box with a note that said, “Do not open.” Attached to the note was a key.

Of course, you know what happened next. Pandora’s curiosity got the better of her, and she took the key and opened the box.  When she raised the lid, lots of bad things – envy, sickness, hatred, disease, war, pestilence, and famine – flew out into the world.  By the time Pandora closed the lid, it was too late. The world was no longer perfect. 

That’s how most of us recall the myth.  But there’s more.

Pandora’s husband heard his wife crying and came running. She opened the lid to show him that the box was empty.  When she did, one little bug flew out, smiled, and flew away. That little bug was named HOPE. And that little bug made all the difference as it offered the encouragement required by the community to believe that they could make the world a better place to live, in spite of the bad stuff.  And by the way, Zeus’ heart was softened, and he freed the other brother.

What’s the moral of the story?  Put simply, hope is what gives us the courage to act and to live in a world of threat.  Hope is what allows us to overcome our fear.  

Right now, there is no cure for FTD.  However, I am hopeful that someday there will be. I’m also hopeful that those of us living with dementia can improve the quality of our lives by being honest, transparent, and willing to make some changes in the way we live.  I’m hopeful that by acknowledging but not giving into its challenges, we can make dementia a stop along the way of our human journey, and not the end of the script.  

Friends, we are living in uncertain and trying times. The powers and principalities of this world are again at odds with the grace and wisdom of God. Yes, many are losing hope. It is our sacred task and honor to present our hope to the world.  For without hope, all is lost.  

As St. Paul writes, “May the God of hope fill you with all joy and peace in believing, so that you may abound in hope.” 

And, as our cat Samson delightfully reminds us, boxes are meant to be opened and fully enjoyed.

 

Lessons Learned while Traveling with Dementia

 
Emily Ingalls and Rev. Tracey Lind, Dementia Advocates

Emily Ingalls and Rev. Tracey Lind, Dementia Advocates

 

As we approach the gate area for our flight, Tracey turns to me anxiously. “You’ll go up and tell them, right?” So, I sidle up to the desk and murmur to the agent, “My companion has dementia. May we board with the early group?” They are always accommodating, and they aren’t supposed to ask, but it makes us both feel better to state ahead of time why two apparently healthy women need to pre-board.

Forgive me. I used to look at the pre-boarding people and scan for frauds who just want to make sure their carry-on luggage gets into the overhead bin. I now understand that not all disabilities are visible.

Travel is stressful and confusing for people with dementia, and it can be overwhelming for their care partners. Tracey’s response to travel and her increasing need for recovery thereafter have become two of the markers we use to gauge the progression of this disease. Traveling requires extensive effort and planning, far more than it used to, and there will come a point when it just isn’t feasible anymore.

According to Us Against Alzheimer’s Fall 2019 Pulse of the Community online A-LIST survey results, nearly half (48%) of dementia caregivers “found that a loved one had been afraid or overwhelmed by unfamiliar surroundings, and nearly four in 10 (38%) said a loved one had become anxious in a crowded place, triggering an unexpected behavior. In addition, 38% of caregivers said their loved ones could no longer physically handle traveling and vacations.”

Frontotemporal Degeneration (FTD), although rare overall, is the most common form of early-onset dementia, and it messes with the part of the brain that contains one’s filter, blocks background noise, and prioritizes information. Normally, our brains sift through lights, sounds, and other distractions that compete for our attention. Our frontal and temporal lobes are responsible for telling us what behavior is appropriate, helping us judge whether or not we are in trouble — and then deciding what to do if the answer is yes.

Imagine it’s Thanksgiving weekend, the busiest travel days of the year, and you are sitting in the sports bar at the airport. The bartender is moving around making drinks, talking to the guy next to you, and the waiter is walking back and forth behind you. The busboy clatters past with a load of glassware. There are four screens with four different games going.

Outside in the terminal corridor, the PA system is announcing flights boarding and passengers gone missing. A family with three small children and a screaming baby hurries past, having been delayed in the TSA line when the toddler refused to go through the metal detector. If your brain is in working order, you can tune out most of this and focus on Ohio State vs. Michigan.

If you have dementia, you can’t.

Everything comes at you with the same intensity at the same time — all of it, the screaming baby, four games, “welcome to our city, please watch your bags.”  So, of course, your mind explodes. You go into a fetal crash position, arms over your head, hands on your ears. You want to cry and run away, but you don’t know where you are or how to get out of there. And your beloved care partner is staring at you, praying for divine intervention.

Traveling with early to mid-stage dementia does not have to be this way.

It is not as much fun as it used to be, but it is possible to get where you need to go without getting shredded in the process. Tracey and I run the airport gauntlet two or three times a month, and we have learned how to continuously adapt our expectations and plans to our abilities. It requires thinking through the entire process, door to door, ahead of time, trying to envision potential obstacles and worst-case scenarios — weather delays, longer lines than expected, missed connections — and how we might deal with them. 

Between the onset of brain disease and the late stages in a skilled nursing unit, there are a lot of years when bucket list items are still possible, and shared experiences can still be enjoyed. As dementia advocates, Tracey and I are committed to sharing the truth and spiritual insights we’ve gained from a life complicated by dementia with as much of the world as possible, for as long as possible. So we travel. A lot.

Below are a few of the tips and tricks we’ve picked up along the way.  I hope you will share your own in the comments below.

Emily’s Tips for Tranquil Travel

The goal is to get where you are going as smoothly as possible, with as little fuss and anxiety as possible.  Anxiety undergirds dementia even on a good day.  Travel is unlikely to be a good day.  Give yourselves enough time to get through security calmly, yet minimize waiting time at the gate, to board the plane early and settle in while it is quiet, and then to disembark as quickly as possible when the plane lands.

 
A “dementia card” can be helpful to print and carry with you while traveling.

A “dementia card” can be helpful to print and carry with you while traveling.

 

Travel with dementia takes more time and costs more money.  Our days of running for the plane with 20 minutes between flights and changing terminals are over.  These days, we plan ahead to decrease stress:

•    Fly at a less busy time of day, one that allows time to get out of bed at a reasonable hour and follow your usual morning routine as much as possible.

•    Book a direct flight whenever possible.

•    Pay for seats closer to the front with a little extra space and fewer distractions.

Airport Security is a perfect recipe for a dementia meltdown — chaotic, crowded and noisy.  TSA pre-check helps, as does Clear if you travel often. 

•    For people who are more disabled, there is TSA Cares.  (855) 787-2227.  Call 3 days ahead and tell them you are bringing someone who has dementia. They will meet you on the entry side of security and help you through. Some fine print is involved, which you can find here.

•    Whichever security screening line you choose, make sure the two of you are together — don’t let anybody butt in between you. The care partner should go through the metal detector first. This allows you to catch your spouse before she wanders off into the concourse and disappears, leaving her belongings behind while you are still being patted down at the checkpoint.

Waiting for your flight also requires a strategic game plan. Once you have made it through security, you may have some time to kill before your flight boards. Find as quiet a spot as possible. If you have access to the airline club, that’s your best bet, but an unused gate area or the back of a coffee shop is also good. Find a place where you can’t see the screens, set back a bit from the concourse. Leave that spot when you have just enough time to saunter to your gate, arriving about five minutes before boarding begins.

When boarding is called, don’t be proud:  go with the first group, the ones needing extra time or assistance.  Get behind your companion, making sure she knows what seat she is in.   It gives you an opportunity to slip one of your dementia cards (see below) to the flight attendant.  Get your companion settled in a window seat, shade down, headphones on and playing her favorite music or movie on a tablet. 

After you arrive at your destination airport, arrange for an easily identifiable location for your family to pick you up or take a car service or a taxi.

Do not opt for two trains and a bus to your lodgings unless you and your partner have both spent years riding those two trains (or ones that look just like them-- see “perfect recipe for a dementia meltdown”, above).

One last thing:  I know you love your family/college roommate/fraternity brother and have stayed at their house before, but things are different now.  Your companion and you need a private room and your own bathroom. If that is not available, book a room at the hotel down the road. 

Now that you have gotten yourselves where you are going, greet everyone, and then go to your room, shut the door, and take a nap. You both will need it.